Archive for the 'Diagnosed' Category
Treasured moments
• July 5, 2020 • Leave a CommentPosted in Diagnosed, Life after diagnosis
Tags: acceptance, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, Fear, friends, gene therapy, God, hope, journey, joy, life, Love, memories, metachromatic leukodystrophy, MLD, strength
The gift of struggle
• June 22, 2020 • 2 CommentsPosted in Diagnosed, Life after diagnosis, My journey
Tags: challenge, changes, eli and ella, Eliandellasprayerwarriors, gene therapy, God, Hero, journey, joy, life, memories, metachromatic leukodystrophy, MLD, rare disease, strength, struggle
And so I write
• January 25, 2020 • Comments Off on And so I writePosted in Diagnosed, Life after diagnosis, My journey, the ride of my life
Tags: acceptance, challenge, changes, demons, Eliandellasprayerwarriors, Fear, God, hope, journey, life, metachromatic leukodystrophy, MLD, sorrow, strength, warriors
The pain of letting go
• October 27, 2019 • Comments Off on The pain of letting goPosted in Along the way, Diagnosed, Life after diagnosis, the ride of my life
Tags: acceptance, Eliandellasprayerwarriors, Fear, grief, journey, letting go, life, Love, metachromatic leukodystrophy, MLD, normalcy, sorrow
Dream a little dream
• June 26, 2019 • 2 CommentsPosted in Along the way
Tags: Dream come true, Eli and Ellas Prayer Warriors, God, leukodystrophy, metachromatic leukodystrophy, MLD, questioning, sorrow
The desperate search for joy in pain
• January 16, 2019 • 7 CommentsPosted in Diagnosed
Tags: acceptance, eli vivian, Eliandellasprayerwarriors, Ella vivian, Fear, gene therapy, God, journey, metachromatic leukodystrophy, MLD, normalcy, sorrow
Rare Disease Day
• February 28, 2017 • 2 CommentsPosted in Diagnosed, Diagnosis, Life after diagnosis, Milan
Tags: clinical trial, life, metachromatic leukodystrophy, Milan, MLD, rare disease day
When you don’t (want to)see what’s right in front of your face
• October 7, 2016 • 2 CommentsPosted in Diagnosed, Life after diagnosis
Tags: Eli and Ellas Prayer Warriors, gene therapy, metachromatic leukodystrophy, MLD
Fear Not 